Readers of Orbit are likely familiar with the grim statistics relating to disability: that the unemployment rate for people with disabilities in the United States is 66% and even higher (87.7%) among those considered to have severe disabilities. These figures indicate that, despite passage of the Americans with Disabilities Act over a decade ago, not much has changed for people with disabilities in the job marketplace.
Cultural attitudes toward people with disabilities are also slow to evolve. My column this month will deal with one persistent area of attitudinal obtuseness-the misconception (pun intended) that people with disabilities, specifically men with spinal cord injuries (SCIs), cannot have children.
About 15% of all American parents have a disability. That is not so different from the ratio of those with disabilities among the whole population, which is about 20%. While I was all too familiar with the statistics regarding unemployment, I was taken aback by the fact that so many American parents have disabilities. I was equally surprised to learn that the fertility rates for couples that include a male with SCI range widely from 40% to 80%, depending on which clinic we’re talking about.
Why was this a surprise? Simply because I accepted the common notion that being a parent with a disability isn’t “normal.”
Since my son was born, I have often heard comments at schools and other facilities for children such as, “We never had a disabled father,” or “We never thought about wheelchair access.” Or there were more negative observations: “Is your son adopted?” or “I didn’t think people in wheelchairs could have children.”
Well, men with SCI can and do parent with great success. When compared with other advanced reproductive techniques, the ability of a man with SCI to father a child is not complex and often very successful.
How does a man with SCI determine whether he can father a child? Normal sexual functioning is not required. Men with SCI who have no sensation or ability to obtain an erection continue to produce sperm. Sperm can be retrieved through vibrostimulation. The two most common methods of vibrostimulation are penile vibratory stimulation (PVS) and electroejaculation (EEJ). PVS is the first choice because it is simple and noninvasive. EEJ involves the insertion of an electric probe into the rectum near the prostate to stimulate the nerves and contract the pelvic muscles causing ejaculation.
Virtually 100% of men with SCI, regardless of when they were injured, produce viable sperm with EEJ. In short, obtaining sperm is not a major barrier to fertility.
If sperm from SCI can be obtained with relative ease, what, then, are the major problems with conceiving? Semen analysis for men with SCI demonstrates low sperm motility and a higher than usual rate of dead sperm. Simply put, sperm produced by men with SCI are not the best swimmers. How can this problem be solved? For those men with SCI who produce sperm via PVS, home intravaginal insemination can result in pregnancy. Most men with SCI, however, will enhance their fertility potential when using PVS or EEJ combined with assisted reproductive techniques such as intrauterine insemination (IUI), or in-vitro fertilization (IVF).
The technology discussed has been in use for more than 20 years, but it was not until the last decade that it was applied to men with SCI and other neurological conditions. PVS and EEJ procedures have evolved greatly and there is no doubt that PVS and EEJ are safe and effective means of conceiving a child. For instance, at Cornell University, where my son was born, 40% of couples interested achieved pregnancy via IUI or IVF. Outside of the United States, the success rate is dramatically higher (the College of Medicine at National Taiwan University reported a success rate for pregnancy was 80%, while at Sheba Medical Center in Israel, the success rate was 68%).
I would suggest the higher rate of success abroad has nothing to do with the medical procedures but cultural bias. Men with SCI in the United States are not perceived as future fathers and access to health care and advanced reproductive techniques are limited given the fact 66% of people with disabilities are unemployed and most likely uninsured or underinsured. Procedures such as PVS and EEJ are too costly for the average male with SCI.
While I cannot change the social situation for people with disabilities, I encourage men with SCI to become parents if they want to, regardless of the obstacles. Being a father is the greatest experience I have had in my life, one that should be possible for all those interested.
William J. Peace has a PhD in Anthropology from Columbia University. He is the author of Leslie A. White: Evolution and Revolution in Anthropology.
